Monday, July 30, 2012

1:30pm: Gavin did well overnight. The Respiratory Therapist woke him at 2:30am for another treatment with the percussion vest. I'm always so proud of Gavin with how he handles things. He smiled sweetly for the whole ten minutes. It did take a while for him to get back to sleep, but when he did he slept until morning. He had another treatment when he got up.

Dr. O'Reilly, Gavin's ENT surgeon, came by to check his left ear for me. They looked fine to him. He told me that the ear drops can sometimes sting - and that's likely what it was. He said it was fine to stop the drops altogether.

Gavin's doctor came by and had him taken off the Vapotherm and put on regular oxygen. He has been holding his oxygen saturations steady since which is the best news. A couple hours later, he came back with his team and a game plan that has me trying not to get my hopes up. He said that if Gavin can take a good nap today without oxygen - and his numbers stay above 92%, he could go home as early as tonight. If not - they will watch him overnight. Basically, he has to hold his numbers up while sleeping. That's when numbers typically drop. So the good news is, we could come home tonight. The bad news is, we could come home in 159 days. It's all up to Gavin at this point.

Armed with that exciting plan, I jumped into action. I had the Healing Touch therapist come back and give him another treatment. She left me some Lavender on a cotton ball and I placed it near his bed. I fed him a comforting, warm lunch...and then he got a bath in a real bathtub.

I put him in bed and made the room as dark as possible - and put a huge sign on the door that said STAY OUT! Just kidding - it said "Sleeping! Please Shhhhhh!" Sounds silly, but there are no boundaries in a hospital so I need some kind of stop sign so people don't just barge in.

Gavin is currently laying in his bed trying to fall asleep. Every so often someone gets paged right above his head "Lisa, you have a call at the desk!" "Mike, can you come to the front please" Seriously - it makes me nuts. Why must it be right over the patient's heads?? But anyway, he is slowly falling asleep and his numbers are looking good. I'm holding my breath...hoping he won't hold his.

Stay tuned!!

***4:15: For the last two hours I have been sitting in a darkened room watching and waiting to see if Gavin would fall asleep. There were times he looked so close. But then he'd suddenly flash a big smile into the ceiling tiles and start waving his arms. I can't let him just lay here any longer - it's not fair.I just spoke with the doctor to plead my case - I really want us to go home. Unfortunately, he really wants Gavin to stay. So, with tears on my cheeks - it's time to push back the curtains and let in some light in this room.

Re: those ear drops, my son has perforations in both eardrums from tubes which stayed in too long. Last summer when he was 6, he had been in water and even though we use earplugs he seemed to have some ear infection signs, so I put the ear drops in (we always have them on hand due to perfs.) Well he screamed bloody murder that they hurt, then we tried numbing drops, which also irritated his ear, and then he wouldn't accept any at all. The antibiotic drops we have now supposedly have an additional steroid for pain relief, but I'm hoping I never have to try them.

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

I feel honored that you're here to get to know us.

Want to know more? Click on each link under the pictures at the top of the page to read our stories...

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Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

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Gavin's Trust Project

I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can write a check made out to CCIU and mail it to: Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!